What to look for in this edition of the Navigator

Examining Early Intervention: Data collected by early intervention
programs provide
additional insight about the youngest children with disabilities.

Babies Count! A special research and data collection project provides us
with a
unique opportunity to better understand prevalence of vision loss in infants
and toddlers as well as the timing of the diagnosis and referral processes.

About this Series

Welcome to the third edition of AFB’s Research Navigator. This is a quarterly series – accompanying AFB’s DirectConnect newsletter – from the AFB Public Policy
Center. The purpose of this series is to keep you informed of user-friendly
facts and figures and the latest research pertaining to people with vision
loss. The series will also include the necessary background information so you
may use the information most accurately. Readers are also encouraged to check
out AFB’s Statistical Snapshots on a
regular basis. This webpage is regularly
updated with a wide variety of information and tools that address commonly
asked questions about people with vision loss.

Introduction to the Topic

In the previous edition of the Navigator, we tackled the topic “Just how many blind folks are
there anyway?” We looked closely at the various censuses and surveys which
report on the numbers of adults with vision loss, and we discussed why no
single number is the best descriptor or most accurate indicator of the
population of people with visual impairment in the United States. The next two
editions of the Navigator will be
dedicated to taking a closer look at the population figures for infants,
children, young adults, and students with vision loss. Data about the 0-21
population is especially useful for education advocates, policy makers, and
researchers, who often ask questions such as “Is the incidence of visual
impairment increasing among infants and newborns?”; “How are kids with vision
loss doing in school compared to their peers?”; and “How
many students read braille?” In addressing these questions, we will review
several sources for data and discuss the strengths and challenges of each.

Keep reading for more the numbers and nuances regarding infants
and toddlers, and be on the lookout in the next few weeks for a similar breakdown
of data about school-aged children and young adults.

Infants and Toddlers: Counting Our Babies

“Survey says...”

Our last edition of the Research Navigator introduced you to the National Health Interview
Survey (NHIS) and American Community Survey (ACS), two enormous, national data collection
projects which provide self-reported (or, in the case of minors, parent/guardian-reported)
data estimates for the civilian, non-institutionalized U.S. population. These
surveys include estimates of the prevalence of vision loss in the United States,
and – with a little finessing – you can disaggregate the estimates by age and
other demographic characteristics. For more about how to access NHIS and ACS
data, we encourage you to review our webinars on the ACS, the DataFerrett
and the NHIS.

As you will see, problems with
self-reported data and a varying definition of “vision trouble” lead to wide
variations between NHIS and ACS numbers. Based upon data from the NHIS (2013),
approximately 1.5% of the total U.S. population under age 4 was reported by a
parent or guardian to have some level of trouble seeing and 0.1% was blind. Due
to the small number and high variability of children with vision trouble in their
survey sample, the NHIS reported that the actual percentage of infants and toddlers
with vision trouble in the U.S. could reasonably be as much as 0.6% over/under
their estimate. In the same survey, in 2000, the NHIS estimated that 0.8% of
infants and toddlers under age 4 had vision trouble and 0.1% were
blind. In 2007, the NHIS estimated that 1.3% of children ages 3 and under had
vision trouble, and less than .05% were blind. Note
that 0.8% and 1.3% are within the range for which the NHIS reported being
confident about their 2013 estimate; therefore, we cannot be statistically
confident that there has been a change or a trend in the number of infants with
trouble seeing. For additional variability and confidence intervals, see the
NHIS data (we recommend trying out the Integrated Health Interview Series
online data analysis system at https://www.ihis.us/ihis/sda.shtml).

For the American Community Survey (ACS) from 2013, approximately 0.4% of U.S. children ages 3 and
under were estimated to be blind or to have serious trouble seeing. This estimate appears relatively
unchanged from 2007, when the ACS estimated that 0.4% of children
had vision trouble.

So, which is right? Approximately 1.5% or
0.4%? Like we discussed for the data on adults, this is not a problem
with the survey methods. Neither the ACS nor the NHIS is incorrect. During the
NHIS survey, more people seem to self-identify (or identify their children) as
having “vision trouble;” during the ACS survey, fewer people feel like the
survey’s description of vision trouble applies to them. Therefore, we should expect
that NHIS’s 1.5% includes children with a wider range of visual limitations.
ACS’s 0.4% should be understood as representing a narrower definition of vision
trouble, likely those children with more significant visual impairment.

What Do We Know about Infants and Toddlers with Special Healthcare Needs?

Early intervention providers and others sometimes need information
about infants with vision loss relative to other populations of children with
disabilities. Just as the federal
government requires states to report on the numbers of children with
disabilities receiving special education (ages 3 to 21), there is also
information collected by the Department of Education under by Part C (ages
birth to 2) of the Individuals with Disabilities Education Act. However,
because most children receiving early intervention qualify under a broad
category such as “developmental delay,” rather than a specific label/diagnosis,
states are not required to disaggregate their data by disability category. For
children who have been identified and are receiving early intervention services
under Part C, the federal government only requires states to report the
following:

“The number and percentage of children with
disabilities, by race, gender, and ethnicity, who are receiving early
intervention services.

The number and percentage of children with
disabilities, by race, gender, and ethnicity, who, from birth through age 2,
stopped receiving early intervention services because of program completion or
for other reasons...

The number and percentage of infants and
toddlers, by race, and ethnicity, who are at risk of having substantial
developmental delays (as defined in section 632), and who are receiving early
intervention services under part C” (Section 618 of IDEA 2004).

If not to the Department of Education’s centralized data
collection, then where can we turn for early intervention data about children
with vision loss? Although not conducted annually, National Survey of Children
with Special Health Care Needs (NC-CSHCN) is a good source of data about young children
with disabilities, including data disaggregated by disability category. You can search the NC-CSHCN through their new
interactive tool at ChildFind.org. The 2009/10 NC-CSHCN was administered to children
who were reported by their parents/guardians as having ongoing health conditions.
To qualify for the survey, infants and toddlers must have experienced one or
more of the following: (1) ongoing need or use of prescription medications; (2)
an above routine use of services; (3) need or use of specialized therapies or
services; (4) need or use of mental health counseling (5) a functional
limitation (Child and Adolescent Health Measurement Initiative, 2007). With
respect to vision, this survey allowed parents or guardians to report whether their
children experienced a lot, a little, or no difficulty seeing even when wearing
glasses or contacts. For the population of children with special healthcare
needs ages 0-5 years old, this survey estimated:

4.4% (+/- 1%) had a little difficulty seeing

2.5% (+/- 0.8) had a lot of difficulty seeing.

Unfortunately different implementations of this survey have
asked somewhat different questions about vision loss; thus, data is not
comparable from one administration of the survey to the next.

Babies Count: Focusing on the Numbers of Babies in Early Intervention

The Babies Count National Registry for Children with Visual
Impairments Birth to 3 Years is another important information source for
population statistics about the youngest Americans with vision loss, especially
because the project is specific to infants and toddlers who are blind/visually
impaired. The Babies Count Registry has been overseen by the American Printing
House for the Blind (APH) since 2000 and includes data voluntarily reported by early
intervention programs. Presently, 29 states are participating in this registry
(through state agencies, departments of education, or schools for the blind)
(APH, 2015). Babies Count provides a range of data for researchers, including
demographics,
prevalence of visual impairment, prevalence of additional disabilities, and age
of children at referral. According to Hatton, Ivy, & Boyer’s (2013)
analysis of Babies Count data from 2005-2011, of all children in the database
(children receiving specialized early intervention in programs specific to
young children with visual impairments), approximately 60% were legally blind and
65% had additional disabilities.

Given that babies are not necessarily referred for early intervention
at the time of onset of visual impairment, it is difficult to accurately measure
the number of very young children who are experiencing visual impairment and/or
are in need of services. Furthermore, some visual conditions such as
retinopathy of prematurity have their onset or are diagnosed weeks to months
after a child is born. Retinoblastoma and other conditions may develop in the
first few years of life, leading to a later onset of visual impairment than
with other congenital/perinatal types of visual impairment. Hatton et al.’s (2013)
research found that the
average age of diagnosis for infants and toddlers in Babies Count was 4.9
months, and the average age of referral for services was 10.5 months. Standard
deviations (measures of the variability of data) for these averages were 5.7
and 7.8 months respectively, meaning that there was quite a bit of variation in
the age of referral for Babies Count babies.

Finally, from the 2008 NHIS vision supplement, we can
estimate that only 33.4% (+/- 5%) of children ages 0-3 have ever had their vision
tested. This low rate of screening increases the potential that there are many
uncounted, undiagnosed children with visual impairments. These students may not
be receiving early intervention and are most likely not reported in Babies
Count numbers. In particular, young children with low-vision conditions may not
be identified until they enter preschool or kindergarten and are expected to
join with peers in more visually intensive activities like reading, counting, games,
etc.

So Can We Really Track Totals and Trends Among Infants and Toddlers?

Given these data sources, with their strengths and
limitations, there is presently not enough consistent, reliable information to
judge the extent to which the prevalence of visual impairment/blindness among
infants and toddlers or the incidence of children being born with visual
impairment/blindness is increasing or decreasing in the United States. A search
of peer-reviewed journal articles found no recent studies on the epidemiology
of, or changes in, the incidence or prevalence of blindness among infants in
the United States over the past 20 years. One positive sign is that the
National Center for Health Statistics reports the rate of pre-term births (under 37) weeks has
been declining since 2006 (12.8% of all births in 2006; 11.4% of all births in
2013) (Martin, Hamilton, Osterman, Curtin,
& Matthews, 2015). This decline is also occurring in the rate of very-early (under 28 week
gestation) births, from a peak of 0.77% in 2005 to 0.73% in 2013. Since
pre-term births and very low birth weights are associated with a greater risk for
visual impairments (Blencowe, Lawn, Vazquez, Fielder,
& Gilbert, 2013), there may be reason to believe that those types of visual
impairments related to prematurity are also declining.

We hope that this issue of the Navigator has increased your understanding of the implications
for what we do know about infants and toddlers with vision loss; likewise, we hope
that you agree with us that there is a need for more research, earlier
identification, and better reporting of population statistics regarding all
areas of vision loss. Projects like Babies Count must be sustained and expanded.
With better data, we will be more prepared to justify funding and monitor the impact
of supports and services, and with earlier, accurate identification, we can work
to ensure that all families are provided with access to the interventions and
services they need to promote healthy, happy childhoods.

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The mission of the American Foundation for the Blind is to create a world of no limits for people who are blind or visually impaired. We mobilize leaders, advance understanding, and champion impactful policies and practices using research and data.